I find them to be very impersonal – about a very personal subject. Grace

I know people are doing their jobs, and are bound by restrictions. I know that in my head. Another part of me wants to call them all out to stop saying that we are a team. It’s not a team the way that I define the term.

I also know we have rights. Those rights are confusing though. Beyond that there is the constant weighing of what fight to fight. You can’t fight them all – or I can’t anyway- if I was only fighting I’d never get to just enjoy being Grace’s mom. Additionally we’d be fighting the very people we are depending on to help Grace learn. That’s a really tough spot for everyone.

She’s their job. She’s my daughter.

I’m so sad it has to be this way.

And on a related – but separate note – I hate when people describe Grace as complex. It’s a word that does not resonate well with me. It’s often the beginning phrase of an explanation “Grace is so complex……” that seems to include a lot of excuses.

I appreciate the word when’s its used respectfully. This happens when the acknowledgement of her complexity is factored into a plan. Only our epileptologist and pediatrician are really able to use the word without me getting all bristle-y.

Grace is Grace. Let’s focus on her. Her as a whole being. Not how the various “parts” of her don’t really seem to fit.